Marisa: A little girl’s fight to live
Marisa Carney has been diagnosed with rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation, or ROHHAD, an extremely rare childhood disorder that is difficult to diagnose and treat. To chronicle Marisa’s struggle, reporter Candice Ferrette and photographer Alejandra Villa have followed the Carney family since March 2011.
Her fight to live
Marisa is one of only 75 children worldwide to be diagnosed with ROHHAD.
Newsday / Alejandra Villa
Marisa’s next steps
Marisa is taking back her life step by step — first ballet, then kindergarten.
Newsday / Alejandra Villa
Teen offers hope
Brigid Cooleen, 15, is an honor student despite being diagnosed with ROHHAD.
Newsday / Alejandra Villa
A mother’s love
A seizure at age 2 left Trevor Ward, 20, reliant on his family for care.
Newsday / Alejandra Villa
Young ROHHAD patients
Trevor Ward and Brigid Cooleen live with ROHHAD.
Newsday / Alejandra Villa
Off to Chicago
We follow Marisa Carney to a Chicago hospital for another series of tests.
Newsday / Alejandra Villa
Family, friends fundraise
As Marisa fights ROHHAD, the push is on to help fund research.
Newsday / Alejandra Villa
About ROHHAD
ROHHAD is an extremely rare childhood disorder that is difficult to diagnose and treat.
Newsday / Alejandra Villa
How to help
The Carney family and friends have formed a nonprofit to raise awareness and money for research.
Newsday / Alejandra Villa